[mwhitney]

in reply to: OMG! Graves’ Rage and it’s fury! #1178374

I was like this when I was taking my ATD’s a few weeks ago.
Except I was all rage and not caring about anything.

I could have probably done something similar and meant every word of it.
I was unbelievably grumpy, and apathetic and then just rage-y / angry about everything.

When I asked my doctor about it she figured it was a combo of the med-methimazole and my levels dumping down.

I had to go off it and since then the rage has gone down. But it might come back after I start RAI on monday, but I hope not.

[mwhitney]

in reply to: Help! Is this Graves related or something else!? #1178153

I was diagnosed recently and I only made it about 4 1/2- 5 weeks on methimazole sadly, I hear its different for everyone. Some people tolerate it just fine. I guess I wasn’t one of them.

When I was taking it, I felt better for the first 2 weeks and then I started having mood changes (which my doctor thought was the dump down to lower numbers) I didn’t love that, but then my face started swelling and even now although I’ve been off it for about 5 days it’s still slightly swollen. When I called my endo, she told me to stop taking it and come right in.

But if I remember I think she mentioned that a rash and swelling weren’t good reactions.

How long has the rash and itching been going on?

[mwhitney]

in reply to: Help! Is this Graves related or something else!? #1178150

What med are you on?

depending on that, a rash and itching and swelling is probably med related. You might want to call your doctor. And maybe check a list of side effects that go with that medication, that might give you more insight.

I had swelling in my face, and that alone was enough to have me stop taking Methimazole.

Feel better!

[mwhitney]

in reply to: Tell the Truth…. #1177883

I think when you live with any chronic condition you worry about this.
Graves is a recent diagnosis for me but I already live with two other life altering conditions.
And with dating I find that the majority of guys don’t care if they are mature enough to realize things happen in life that we’re not exactly expecting. If they can’t get that, they don’t deserve anyone’s time. Being with someone is about going through things together.

I notice with most they have more sympathy on the fact that I’m able to go through all this and keep going. It’s like I’ve gained extra merit badges for courage and bravery at life. They just don’t know, that’s what you do, when stuff happens- yet.

Sometimes you have to put dating on a back burner, and just deal with what’s on your plate. I’ve done it.

But I can’t say that telling people what I deal with on a daily basis has been a bad thing. I’m not very vocal about things unless people ask, but I usually find out about that they are more willing to open up.

I don’t have a boyfriend, but I can’t say that the ones that are interested are anymore put off by my “problems”, they don’t really mind at all.

[mwhitney]

in reply to: new user 1 year #1177888

I got diagnosed 5 weeks ago and already hit the wall with the medication, I wasn’t even able to try another one, because of my reaction to it.
And today I decided to do the RAI. I realize neither option sounds like a fun time. Both for me have risks, but for me the RAI has less risks than surgery.
I was really hoping for more time, but sometime’s that fork in the road shows up.

If it makes you feel better or you have tons of questions, you can always call your local hospital’s nuclear medicine department, That’s what I did this afternoon when I made my appt. for my RAI treatment. I was able to talk to their guys there’s and ask all the questions I wanted, they didn’t seem to mind and I talked to several people working in the department a nuclear tech, and even their nuclear scientist , they were actually happy that I wanted to share my concerns and thought I was asking valid questions, since they work day in and out they’ve seen everything. I felt a lot better after picking their brains, so I feel like I’m that scared anymore.

Hey it’s an idea, I thought they were pretty helpful today.

[mwhitney]

in reply to: meds, nightmares and feeling blah #1177653

I saw my endo. today, while I was expecting to be placed on another medication, that did not happen.
Apparently the swelling in my face and my already painful lymph nodes aren’t a normal reaction, or side effect. So that doesn’t make me a candidate for more medication.

I had to make a decision today since I can’t let it just rebound again, so I decided to go with the RAI. Both of my options are scary and I don’t like either of them. But I really thought I’d have more than 5 weeks to mull the options over and maybe talk to a surgeon or something, didn’t even make it to my 6 week blood test.
I’m going in on april 15th (it was the soonest they had), to start it, I was able to call the hospital and pick the nuclear neuroscience physicist’s brain and ask questions about things, which was really nice.

He was able to tell me some things like the half life of the RAI is 8 hours, so every 8 hours the radiation lessen’s by half. And that the RAI and surgery both have the same results, I didn’t know that the body eventually pushes out the remaining thyroid tissue over time, that the radiation kills- so eventually if it works properly the thyroid is removed either way.

science. weird.

[mwhitney]

in reply to: meds, nightmares and feeling blah #1177652

Just got a call back from my endo’s office.
She said to stop taking it and wants me to come in tomorrow.

Feeling better about that, hopefully we can find another option.
Swelling in my face is never a good reaction for me, it’s better than it was yesterday but it’s still pushing on my eye.

[mwhitney]

in reply to: meds, nightmares and feeling blah #1177650

I’m calling my endo. tomorrow. I think I’ve got to be allergic to the Methimazole. My face just keeps getting more swollen, and is starting to get red and blotchy. Plus it’s making me feel terrible, I’m just apathetic or rage. I’m at 5 weeks on it.

I’m going to make her try something else. I’ve tried cutting it down by a half at night, (the nightmares have stopped ) but the swelling just isn’t going away, it’s staying the same. I can’t take it anymore.

I’ll know more tomorrow.

Thanks everyone!

[mwhitney]

in reply to: meds, nightmares and feeling blah #1177648

Thanks, I’m trying to hang in there. It’s hard when you’ve got multi layer problems all going at once.

I was also wonder is there a rate of problems with the face? with the meds or the disease it’s self.

Last week I had a hemi-facial spasm, which I’ve never had, it was like someone split my face down the middle. It was awful. And lasted 3 hours. Tugging at my eye and cheeks and jaw, I was pretty much screaming.This was the left side of my face.
This week the right side of my face is swollen.

And I’m starting to feel nauseous and sick like I was before my symptoms were controlled.

[mwhitney]

in reply to: Gaining weight? #1177406

I was losing weight prior to my graves coming on, and then as soon as I started having symptoms, I gained 10 pounds in about 3 weeks.
Granted I was underweight before the symptoms had hit as was told I needed to gain, but before symptoms hit took me 2 weeks to gain 3 pounds. Those pounds hit fast.
Since I’ve gone on anti thyroid meds, My weight has stayed the same.

[mwhitney]

in reply to: RAI and radiation exposure to others #1177379

I have to wait a few more weeks to test my blood, before I get to see my Endo. again.

So far my meds seem to be going fine, I don’t notice any side effects from them (just the grave’s it’s self), so there’s won’t be a need for a change unless something happens with the liver. I’m hoping it doesn’t, but need to do my research incase we do have to take the next step.

I read the article you have posted and it further confirmed the things I was worrying about. Between my mother and the 2 birds and dog, and space in my house. Limiting my exposure to others would be difficult. And with my mother’s exposure to radiation at the max, it does sound like it would not be a good thing.

I will ask my doctor about the radiation exposure with the RAI the next time I see her. But she might give me the run around.

For those of you who have had RAI, is it just once dose? Or are there multiple doses and I was curious about the interval’s, how often you take it. Did anyone feel strange?

When I did my uptake test and scan, which was a minor dose- I ended up in a confused state, feeling strange and foggy headed, and so tired I could barely tell anyone what I needed. I did not like that feeling.

Again, thank you for your insight!

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